dr.bolognese errr.....

[bubbles0309]

well thats my NS and ive been having really terrible headachs and lower back pains again and he tells me thats normal after surgery and schedual and appointment for 6months later!!! im getting sick and tired of rushing to the e.r everytime it gets serious they take a CT and say everything looks fine send me off with med's and i get home and it comes back a week later most of all i went to 2 NL's and they told me follow up with your NS im so fustrated with dr.bolognese he doent seem to understand the pain or things dont just go away after surgery what should i do....i dont even have anyone to perscibe me meds cause no1 seems to take my case of chiari they dont understand they look @me as a drug addict their *$%^ing crazy!!  how do i get my NS attention ...and i tried being aggressive and dox even called him wen i was in the e.r i'v been in the emergency room twice since my last surgery pfd 06/03/09

[godrocksmysocks]

allright....i understand your concerns but I want you to know that Dr. Bolognese is a great doctor and is not putting you off.  When were your surgeries?  I think you need to give them a little more time...these are big surgeries...more time to heal...

[bubbles0309]

welcome! u can always vent, share stories that could help others here, even if you think its just you someone can relate very much even if you think its not of importance

um... no i have not tried that for one im way to scared lol, but most of the dox wouldnt even suggest it cause it could cause more nerves to hurt in the long run and cracking is not a good thing when u have chiari at the sametime but i just do physical therapy and occupational

my tethered cord was so severe i started to lose bladder control,my balance,.memory, sensitive to sound and light,weak leg muscles, and very back lower back pain,buldging disk,couldnt walk ect....im happy i got the surgery cause even though my legs are still weak i can continue to walk with limitations and my lower back still hurts but not as bad as it used to and i get the worse muscle spasms but i wont know what works and what will not till a year or so has passed

[heartofanamcara]

I am so moved by your story. I am new to this community and am just getting my bearings on how to connect and share. I am just beginning my journey with thethered cord symptoms and am now wondering if the chairi's dx I received is also involved but I do not have severe headaches and my heart breaks for those who have to live with that. It sounds like the dear folks who are writing to you with their support and suggestions have much greater experience with dealing with NS and such... but I am also wondering if you have ever tried working with acupuncture or other holistic healing methods that may help you along with your recovery from the surgeries and may give you a "leg up".
All my good thoughts go with you.
Barbara

[bubbles0309]

thanx il try it!

[youngwife]

Hey!  One last thought....

I wouldn't rule out Dr. Michael Rosner in North Carolina.  If there would be any way you could get to him, I think that he would see you.  You can go to his website (just google his name and chiari), and leave a comment with a question.  He will usually respond very quickly.  

From what he and his staff said, he has taken several TCI patients.

HTH!
Rebecca

[bubbles0309]

yep thats my next step and morphine i hate it..it messes up my tummy but thanx guys il let you know if my pcp is willing i just changed to a new one so hopefully she helps.

[Shane99]

I agree with Selma. Recovery takes time. After my decompression surgery, I had to look at my recovery on a monthly basis - daily would only depress me. And please understand that sometimes the surgery simply doesn't help. I know that can be a very scary thought, but it can be the truth.

Talk to your Primary Care Physician - if she/he isn't comfortable learning about Chiari for you, then find one that will. Your PCP is the "Captain of the Ship" they are in overall control of your health. In a lot of ways, your PCP is the most important of your doctors, especially after surgery. It's this persons job to talk to the Neuologists and Neurosurgeons for you. Explain to your PCP that you are in extreme pain and discomfort - ask for a strong pain-killer. You may need something long-term like Lyrica, as well as something for more intense flair ups like ultracet or a morphine derivative.

I know that most people don't want to become addicted to pain-killers, but after neurological surgery, your body has been ravaged - especially brain surgery. The human brain is not supposed to come into contact with air. It's not natural and it can effect you. Sometimes it's necessary, but it still takes the body a long time to recover. Over a year is not uncommon. If you need the pain pills, then get on them. You have the right to live a pain free life. After things start calming down in your body, the doctors can help you get off any medication in a controlled environment.

Dr Bolegnese is a surgeon, surgeons seldom prescribe medication, they're kind of like glorified mechanics, they fix the problem. It's the Neurologist that deals with the medical aspect of neurological problems. They are supposed to be the one that controls neurological pain. But anything they do - NS or NL - all the paperwork needs to be sent to your PCP. You may have to request that they do this.

Good luck and keep us posted.  

[selmaS]

I heard that there is a NL in the TCI building.....maybe u can do a search and find his name....I am sure being in the same building he knows chiari and should be able to work with u....unfortunatly NS do not see patients unless they need surgery or a follow up......all the inbtwn we need another dr.

He is not brushing u off......and it is not u....it is normal proceedures for them.

"selma"

[bubbles0309]

yea i did that all he could tell me is he does not do refferals and to call the office i trusted him sooooo much and now it feels like a very bad vibe uh feels like a bad relationship lol oh well....just sit and wait and im very impaitent i love to move im very outgoing not at home i like to work and stuff sorry need to vent for a minute but imma talk to the president of the tci thats what my aunt told me to do so maybe if i start going up to higher comand i will get it i hope...

[selmaS]

I know it is hard, but I am sure u can find a NL that understands chiari and can work with u......I just found out my sister's PCP knows chiari and EDS....so I am thinking if this dr takes my insurance I am changing to her.

I am sure , u will find a dr whether it is a NL or a PCP that knows chiari and related conditions.

I am doing just like u, learning to be a couch potato....it is not me.....I am used to doing all kinds of things including cutting the grass...gardening ect.....and now I just watch the grass grow.

But, I know if I push now, I can make things worse....so I sit.

And I know u must understand the trauma ur body went thru...u had several operations.....it stirs everything up....the meds mess us up as well.


Try and e-mail Dr B and ask for a referal to a NL to help u until ur 6 month check up.

"selma"

[bubbles0309]

yea i really dont do anything im always at home i dont go out at all unless its to the pharmacy and dox other then that i feel that i accomplished becoming a couch potato other than stretching and the little i do to keep moving walking in the house/backyard.

and i did see NL's and they just tell me they cant help me at all that u should just see your NS but they dont understand.

my first surgery was in 03/25/09 and my most recent was 06/03/09 so i know i have to heal its just really hard with no doctor wanting to attend to my needs cause of chiari it just makes no sence...

[selmaS]

Hi....I am so sorry u r having so much pain....getting a new dr is not the answer.

But U should have another NL to see when u have issuses.Plus, u do need time to heal.....u really have been thru alot and it will take time, ur surgeon can not help u during this time.

I was told, after the meds ran out if I needed more to see my PCP or another NL to help me during healing....and to see my NS in 6 months.

Granted, I did not go thru as much as u.......

May I ask what u do on a daily basis? It could be that u r doing too much......how many weeks post op from ur first surgery?......

Find a NL or PCP to go to instead of the ER.......try to relax and know u will hurt.Ur PCP can RX meds needed to keep ur pain managed.

I know what u r going thru isn't easy......I wonder myself how will I get thru this and I did not have as many issues going on as u.If I am still taking it slow and finding it difficult to do things......I can only imagine how u feel.Plus, u went in as an emergency and u could have some issues that will not go away.....we all have that possibility..we know that b4 we have the surgery......u had to have it......that was a difference.

I hope u can relax and let ur body heal....and know it will take some time b4 ur HA's lessen.....u may need meds a bit longer.....or try pain management.

"selma"

[rozia]

Dr. Guy M. McKhann
Columbia-Presbyterian Medical Center
710 West 168 Street
New York, New York 10032
[phone]
***@****

Dr. Neil A. Feldstein
Pediatric Neurosurgeon
Columbia-Presbyterian
Medical Center
New York City

*****THE CHIARI INSTITUTE*****

*Dr. Thomas Milhorat
*Dr. Paolo Bolognese.
865 Northern Boulevard
Great Neck, NY 11021
Phone: [phone]

Dr. Vallo Benjamin
NYU Medical Center
530 First Avenue, Neurosurgery,
New York, NY, 10016
[phone]

Dr. Deborah Friedman
Neuro-opthalmologist
475 Irving Avenue
Syracuse
(ph) 315.464.3937  

Dr. Charles Hodge
University Hospital,
Syracuse, NY 13204

Scialabba, Fred P MD
North Country Neurosurgical [phone] 454 Glen St # 2
Glens Falls, NY 12801  
Dr. Nancy Havernick
Pediatric Neurologist
5850 Heritage Landing Dr.
East Syracuse
(ph) 315.446.2985  

Dr. Jeffrey Wisoff
Neurosurgeon
New York University Medical Center
New York City

[rozia]

there are alot of Chiari drs in NY

[bubbles0309]

i wish i could..i tried but no one will take me specially cause bolognese already has a bunch of lawsuits so its kinda hard since he already put the knife in so i have to tough it out...uh..but thanx :)

[youngwife]

I am sorry that you are having such a tough time.  

Is finding a new neurosurgeon a possibility at all??  I know that now that you've had surgery, it may be hard to find someone to take you on as a patient.

Tough, tough situation...again, I am sorry.   I wish I had more advice for you, but I do understand your frustrations.

I hope you are able to find someone to help you!

Rebecca